ADHD Twins...barely coping

[Chewedstring]

Hello, I'm new to mumsnet & hoping there are some understanding mums out there who know where I'm coming from. I have identical twin boys aged 9 with adhd, they have been on meds for last year which is brill for school, but out of school is a different story. we don't medicate outside of school as they need to eat & sleep & off meds their behaviour is foul.
Is hound add that my husband works away, so I am on my own in the week & trying to hold down a demanding part time job. I'm exhausted and struggling. We've just got DLA and I'm so overloaded, I don't know what to use it for to make life better.
Boys school is brilliant, but I worry about their ability to make friends - we don't get many play invitations Md I feel so isolated, such is the stigma of adhd, I tell very few people and sometimes regret telling other mums when the play dates are not returned.
There seems to be no support out there - no parenting classes in my area (midhurst, West Sussex) and CAMHS can only offer meds. I'm looking into help from LANC in horsham - does anyone have any experience of them?
I'm drinking too much, but it helps take the edge off. Even good friends don't really understand how different parenting my boys is. Any help/ advice would be greatly appreciated, sorry for the moan x

[magso]

Re 7/7 meds. Ds growth did take a slower curve for a while - I think whilst we all adjusted to a different eating pattern. Like others he has a good breakfast on waking ( early), with a second breakfast with his tablets. He eats very little during the day at school, but needs feeding afterschool and then a late tea and often supper! He is very slim, so often underweight but nearer average for height - as he has always been. His new paediatrician also worries about his weight (under 40kg)even though he is on much the same centiles as always.
It was quite a revelation having ds on meds when at home, and life changed a lot. Not suddenly - I think it took time for ds (and us) to make use of the extra window of opportunity. Occasionally (very rarely!!) we forget to give him his tablet (in the holidays) and then around midmorning we suddenly realise what the problem is! There is no doubt ds is happier when he is medicated - he has more control of his life.

The cup of tea in bed is so restorative! Dh does this for me too when he is home!!

[lucjam]

Hi, i am just in the process of filling out forms for Lanc, we are in E Sussex. Would be intereted to hear how you get on. I can imagine its going to be costly - especially if you have to pay twice.

I'll let you know how we go on, just waiting for my doctors letter.

[Chewedstring]

Well, my oys had tablets this weekend and it made a huge difference, I did a good sales pitch to them explaining that we would all have a happier weekend and they agreed. I do feel like I run a cafe at breakfast & tea time- I will get them whatever they'll eat - bacon, egg, American pancake, hot choc & squirty cream- anything so long as they'll eat it!

As for LANC, I haven't heard anything yet & they've had the forms for a week. I had heard that an assessment with them costs &1000, but we don't want an assessment, I agree with the CAMHS assessment, so we'll see what they can offer (& how much £). Good luck lucjam, do let me know how you get on!

[popgoestheweezel]

Glad to hear you had a positive weekend.

[Chewedstring]

Thanks Pop for your helpful suggestions & support. (thanks)

[Chewedstring]

Or rather (!)

[lucjam]

Got my GP letter, filled in the form so sending it off tomorrow. £1000 gulp, in my mind it I had £400-600. Gosh £1000 is a huge sum. Eeeek.

[Chewedstring]

One of the Drs from LANC left me a message on answer phone- when I learn more about what they can do to help, I'll let you know.
Yes £1k is a hell of a lot, but, it took 12 months for us to get a dx thru CAMHS, they are very stretched and have to prioritise, so adhd gets pushed down the list. I was told it could take a year, or longer (!) but was confident that my inner lioness would shorten the delays. Despite my best efforts - pointy elbows, chasing up at every stage, it was till 12 months. The time did give me the chance to get my head round the condition, read up on it and come to tems with the option of meds. I also spoke to a friends who also medicate and they said- don't hesitate, it so helps quality of life and my boys have caught up at school.
Good luck x.

[lucjam]

Hiya, I just emailed my stuff this morning and got a reply saying they would be in touch in a week or so. They also told me what to say and what not to say to the health insurance bods. Fingers x'ed for both of us.

[Chewedstring]

Hi again, Dr from LANC left message saying that as we had diagnosis, they couldn't really help and suggested contacting ADHD coach. I wish they had explained that when I initially rang them and before I completed the forms x 2 & asked my GP to refer- rather annoying & disappointing that they cannot offer any support. They've given me names of 2 coaches that they use & I will contact them.
Do let me know how you get on.

[Chewedstring]

Anyone??

[henryhsmum]

My DS is 8 and has ADHD and autism/aspergers. He is on ritalin short release. He takes 15mg at 8am, then 10mg at 10.30, 10-15mg at 1pm, 10mg at 5pm. I could not cope with him without the meds as he is so noisy and hyperactive!

I would say try medicating at weekends and evenings. My DS weighs 21kg so he is over the amount for his age. However, we have a psychiatrist who is a top specialist in ADHD and does research on meds and he says dosage is individual depending on how the child metabolises it rather than being based on weight alone.

[Chewedstring]

That's interesting thanks hensmum, I think CAMHS will look at changing meds to try & stop tics. I so understand the noise issue- you can imagine what it's like with my twins!!! Absolutely no volume control. I usually can't wait for bedtime! Does your DS have trouble sleeping at all? You are very lucky having a switched on adhd specialist psychiatrist , was that through CAMHS? There's just so little support out there. I feel like a cracked record..and it's so exhausting. Thanks for responding.

[henryhsmum]

Hi

My DSs psychiatrist is through CAMHS. We were lucky and got referred it him in a couple of weeks as we were already seeing a behaviourist there.

Yes his sleep is not great. He will settle with a routine but wakes very early and is full on from the minute he is awake. I count down until his first tablets at 8am!

How do you manage your twins noise with neighbours . I am about to move to a semi having lived in a house that is some distance from neighbours and I am worried DSs noise roil upset neighbours

[Chewedstring]

We have an elderly neighbour who is hard of hearing. She's also a retired doctor who knows about their dx. I do feel embarrassed about the noise at times, but most boys are quite noisy aren't they and they have to be themselves, esp when meds wear off?
My boys wake up v early, always- no chance of a lay in here! Mostly they'll go downstairs & watch tv but always noisily & it's underneath our bedroom. Thankfully they are tucked up in bed now. As I put them to bed Ds1 said ' I really hate this adhd' poor love.i just hope it'll be easier as they get older and learn how to manage it better.

You are def v lucky with your psychiatrist & behaviourist.

Good luck with the house move, I hope you'll have good neighbours.

[henryhsmum]

I have heard the hyperactive side of ADHD often gets better with age but the inattentive side persists. My DS wakes very early too. He knows what ADHD is and he knows what ADHD behaviour is but he does not yet say he dislikes it.

I would ask for a second opinion with your boys if you are not happy with their meds. There is a new medication called lisdexamphetamine (elvanse is it's brand name) and it is meant to be very effective. I tried long acting ritalin with my DS but found only the short acting is really effective.